MS: Multiple Sclerosis- Living with the MonSter... the Unwelcome Intruder!: Sympathy from friends... thanks but...

This is my blog about living with MS. This is My Story. Sometimes it's not pretty and other times it's even embarassing. But, I thank God for His strength, because without it, I'd be literally nothing! 2 Corinthians 7:9. MS is a nightmare, a mystery, a vicious medical mess that bears a much greater need to understand because we can't SEE it.

Like other diseases that act this way, folks don't respect it or recognize it and patients are left feeling discounted. My goal here is to educate my friends and family and anyone else who comes along. I don't LOOK like I've got and with a high pain threshold, I don't often show it. But it's always there... and it's always nagging me. Please forgive the graphic nature of the picture but it's real: we never know when a part will fail. That's MS.

Wednesday, June 3, 2009

Sympathy from friends... thanks but...

Many friends express sympathy for me in my work and general activities that it must be hard to type etc... but it's not things like typing that get to me... my fingers are fine... most of the time... when they have their moments, it's a just that: a moment and it passes ... again and again and again... but it's bearable when it happens cos it's a momentary thing, just signaling another episode in another part of the body- like burning nailbeds or fingertips.

But the key, and I can't emphasize it enough is how wicked the disease is for each individual... the symptoms list is incredibly varied ... and each of these symptoms vary per person in degrees of impact... and each person can have some or all or barely any but one really, really major symptom like a friend of mine who is suddenly blind now because of lesions on her optic nerves. It's just that crazy and horrible. And each time each symptom shows up, it's never the same twice. Some days the nerve pain is excruciating in my feet, other days it's little pin pricks anywhere on my body or it's a muscle seizing up so tight up my back or a "charlie horse" that won't quit up my calves or thighs (spasticity to the nth degree) or forearms that simply spasm repeatedly. Some times in church, I sit with my hands spread eagle because my hands make fists that won't quit aching. Pain. Simply pain. And it's indescribable and unseen.

This blog is therapeutic to share it all. It's a creative outlet to express it without feeling like I'm always whining to others or perhaps not being as "graceful" or "grateful" as I think I should be when I don't feel like it. MS is a really very common disease but very few medical folks know it. Everyone seems to know someone with it but they don't know alot about it.

When I was diagnosed with it, some reactions were, 'Oh, well I know a ________with it and she/he's had a very fine life with no real problems.' Yay, for them, really appreciated that one.

Once again, MS isn't the same for everyone. Mine is primarily SENSORY (meaning lots of pain, mobility issues and spasms/spasticity). Wonderful. No one else's MS is anyone else's MS ever. Essentially, awareness and education seems to be like with any disease, any condition, the key to understanding. I have no illusions about a "cure". Something this vague, this incredibly difficult to diagnose to begin with isn't going to be "cured". But it can be understood better.

Now, some days I feel like this picture and totally understand her!

I remember being happy the day I finally got a diagnosis. My neuro looked at me like I was crazy and point blank said, "I don't know what you're so happy about, I HATE this disease." I said, "I've got an answer finally, after 20+ years, I've got an answer instead of being treated like a hypochondriac all this time!" He just smiled and said, "yeah, we've got an answer."

Answers but no solutions and tons more questions.

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How to Read this Blog....

Everything starts from the bottom up... the beginning is at the bottom, so if you want to begin this right, go to the bottom post and begin there... that's where the "journey" begins... and then from there, the top posts are added to it as I see things and think things and progress on this really strange merry-go-round the Lord has given me to ride.

And yes, the Lord HAS given me this merry-go-round and yes, it's full of pain, but it's all temporary. All of this is but a fleeting moment in comparison to eternity. When I think back on my childhood and my life in general and the emotional pains I've been thru, I think perhaps it's all been the Lord's Boot Camp preparing me for the endurance and strength I'd need for this time to come. Being in my mid fifties with this disease, I know there's a long time of it to endure... and so I look up and pray and know He will make a way.

For those of you who will read and pray, thank you so very much from the depths of my soul, I thank you with all that I am. Prayer is our greatest tool and I know it's prayer that holds me together when I least expect to make it through a moment. Prayer is God listening to us and working for us and us talking to our Father. I have a running conversation with Him, so much so that sometimes, when I'm fairly sure that He's sick of hearing from me and then a prayer is answered, I realize He's not, I just need to be patient.

Prayer Warriors are important... I have tremendous warriors in my corner!I have a church family I'd be lost without and a small group that is very close to me! Even more so, I frequent a racing board where long ago a dear brother in Christ friend of mine from the board got the idea that a "front porch" would be a great post to start and keep the rules simple: no politics, no bickering, no harshness, no complaining... on the porch the weather is always perfect, the seasons change wonderfully and there's rocking chairs like Crackerbarrel's... And bring your prayer requests, your concerns, your family news and shares. And so we did... and we've had friends get ill and die, and friends who've lost family there among us (myself included), etc... and all the while not ever knowing each other except by the board posting, we prayed each other thru these things for the past 10 years or so. Along the way now, we've met up, we've called each other and our bonds are stronger, but it's through prayer. God connects people because He loves us... like it says, WE love because He first loved us!

So pray, I appreciate prayer and don't even need to know it. Thank you in advance!

MS: It's Mystery, It's Symptoms, MY Symtoms - trying to explain, trying to deal

Dealing with MS is a crapshoot. There's no one client / patient exactly like another. Every person experiences MS differently in different levels at different intensities at different times.
Worst, that I've learned is that very little of the medical community understands or even WANTS to understand MS. It's the catch all excuse dx when they need one for those who don't have a clue (or as you're watching "House" you hear it a lot, like it's a good guess AND it could instantly be dx'd like that) or they just nod their head as if they do understand and then do as they please. Let me tell you from personal experience, alot of them just don't know or understand nor do they care!
In this section, I'll be listing the symptoms and their descriptions according to common web info sites.

Symptoms /Diagnosis of Multple Sclerosis

What are Common MS Symptoms?
MS affects everyone differently. The location of inflammation and demyelination can affect how many and how severe the MS symptoms are. Some people experience a lot of these symptoms; others only a few.

[I happen to experience pretty much every one of these in one form or another at varying degrees of intensity depending on the flares' intensity. My MS is entirely sensory, which some might say, wonderful! You're mobile! My original neuro called it "Benign MS"... how much sense does that make when it's doing damage but it's benign? But technically it is, because it's just staying the same and not severely progressing on me. A great nuisance to my daily living activities or how I feel but nothing majorly debilitating ... most of the time. Yes, but it's PAINFULLY mobile at times! So even if you can't SEE the symptom doesn't mean an MS patient isn't experiencing this wicked disease right before your eyes. ]

Even when there are no symptoms, there is progression of damage to the central nervous system over time. That's why it's important to stay on a therapy if you have MS. There is a wide range of treatments for MS symptoms. Please check with your doctor about which treatments might right for you.

[Personal Note: And more importantly, make sure you know what treatment is right for you. Be educated, be your own advocate AND always ask questions, demand answers and refuse to be treated with anything less than total respect. MANY healthcare personnel simply don't understand what they cannot see or figure out and thus they "poo poo" you away into some other dx to get you out of their hair. Sad but true. I've already experienced it on more than one occasion int two different hospitals and with my original doctors.]

MS symptoms may include:

Optic Neuritis: This is an inflammation of the optic nerve, the nerve that controls the eye. Over a period of days, you may develop blurred vision or unequal pupils indicating the eye isn't getting enough light. You may feel pain behind your eye, which increases when you turn your eye. Vision is lacking and judgment is impaired on which ever side the eye is affected. [My very first symptom when my son was born, 33 yrs ago, unequal pupils. To this day I can tell when a migraine is coming by the onset of the unequal pupils, and unequal pupils mean I drive left turns alot, because my right side is not good judgment now. ]

Loss of Muscle Strength in Arms and Legs: Many people with multiple sclerosis lose muscle strength in the arms and legs as the disease progresses. The loss can range from reduced dexterity (the fingers no longer work so well) to paralysis of an arm or leg. Loss of muscle strength occurs not only in the form of relapses (temporary attacks), but also as a gradual (progressive) process without recovery. Depending on the severity, you may need to rely on a cane, crutches, or even a wheelchair to get around. [I'm avoiding the cane like a plague but know it would help some days. But muscles strength loss kills me... had to cut my long hair cos my arms won't support washing the hair to keep them up that long! Shopping and just holding my arms up to browse through clothes is exhausting and causes severe weaknesss. Goodness, that feels so wimpy of me!]

Affecting the Sense of Touch: The vast nervous system includes many sensory nerve fibers dedicated to helping you be aware of your environment. They provide the sense of touch in your fingers, and your ability to feel cold or heat on all parts of your body. When these fibers are damaged by multiple sclerosis, your sense of touch may be replaced by feelings of numbness or tingling. Parts of your body may feel burning or cold, even though there is no heat or chill present. MS symptoms can be temporary (relapses) or more progressive, and can occur in various parts of the body. [My second symptom ever but never recognized by the doctors when I mentioned: numbness in several places of my body and to this day: my right foot is almost always numb & super tingly, my right knee IS my first major numb spot, the right upper side of my face is usually frozen, and often spots on my back will go numb. Very strange feeling but comes in handy when you're doing lab work with a tech who can't find your veins on the right side! LOL]

Pain: Multiple sclerosis can be accompanied by various kinds of pain. Damage to the sensory tracts in the spinal cord can result in burning pain in the arms and legs. MS can often result in damage to the nerves of the face, a painful condition known as "trigeminal neuralgia." If multiple sclerosis has impaired your ability to walk, the extra strain in the muscles of your back and legs can become painful. MS can also cause extra tension in the muscles of your arms and legs: this is known as "spasticity" and can also be painful. [My personal symptom friend, spasticity! Never knew what it was til it started happening... goodness what an adventure. And painful- regular unexpected charlie horses without reason. Pain becomes second nature in this disease.]

Secondary major symptom from Spasticity: the MS Hug... read all about in my posts next to this. NO FUN!

The Muscles Controlling Bladder and Bowels: Many people with multiple sclerosis develop trouble controlling the urge to urinate or become unable to completely empty the bladder. Less frequently, they experience problems with bowel control. As multiple sclerosis progresses, people with MS may also be troubled with constipation, IBS, incontinence, bashful bladders, irritable bladder, or a lack of sensation when anything happens in that region of the body causing great moments of embarrassment (personal experience)... and the list goes on.

Sexual Dysfunction: Having multiple sclerosis can lead to problems related to sexual activity. Men with MS can find it difficult to achieve or maintain an erection. In women, MS often causes a loss of sexual sensitivity, pain during intercourse, an inability to achieve an orgasm, or a reduction in naturally produced lubrication and urges. [Marriage killer and relationship destroyer... hard to handle, harder to explain to your other half... everything LOOKS fine... and unfortunately, male prescriptions don't work for women like it does men. Hormone treatment brings a multitude of side effects that are horrendous to deal with and other meds don't fully effect me. Very humiliating, very self-destructive and depressive. Have gone to prayer now... and every so often God blesses me! ]

Balance and Motor Coordination: The part of the brain known as the cerebellum controls and corrects all our movements. Damage from multiple sclerosis can result in poor balance or coordination. You may, for instance, have difficulty grasping small objects, writing clearly, or keeping a steady hand. When walking across a room, you may find yourself losing your balance, as if you were drunk. Like most other MS symptoms, these problems can be temporary (during a relapse), or they can be a permanent result of the progression of MS. [I call it "walking drunk" or "listing like a sailboat", at first, family members just thought I was a klutz, til I was diagnosed. Gotta keep a sense of humor so that now it's downright funny, if I'm in a good mood. The worst part is that everyone experiences this at one time or another. The difference is that an MS patient is ALWAYS experiencing it...not being able to grab that small paper clip they used to pick up with ease, leaning over to pick up something off the floor and missing the item, WHILE leaning over to pick it up LOSING balance and stumbling or falling! Trying to walk through a doorway and bumping into one side or simply bumping into the person next to you cos you can't walk straight next to someone. Constantly coping is constant stress and constant stress exacerbates the symptoms which keeps the merry go round going.]

Fatigue: Many people with MS experience fatigue or tiredness. But since fatigue can be a sign of many other diseases too, it is not often immediately identified as being caused by multiple sclerosis. Fatigue occurs in both relapsing MS and in the more progressive types of the disease. It often lasts for a few months or permanently during which time your energy is used up every day with just a little exertion. Limbs fatigue with minimal use or endurance. [Personal Note: Stamina is nil. This is one of the single most frustrating symptoms of all. For me, a normally hyper person, this has been my greatest setback! And because I've gotten older, everyone wants to blame age yet those 30 years older than me are running circles around me!]

Cognitive Function: At some point in the course of your multiple sclerosis, you may notice changes in cognitive function, such as memory and speed of thinking. You may also have trouble concentrating. In some people with MS, these symptoms can occur early in the disease. In others, they can come later. [This isn't the typical 'just forgot something', it's repetitive lost that thought within seconds and it'll come back a half hour later... or "word fishing" and confusion with "tip of the tongue" moments repeatedly occuring on things you normally know. The brain has many short circuits with MS. Be patient with yourself. Use a notepad, a smartphone, anything that helps your memory keep on track, no matter how simple, write it down immediately and you'll be happier not trying to force yourself to do what you can't anymore. The University of Florida Neuro Dept has a simple online test that can give you a preview of whether there might be an issue. Check it out here: https://webagent.cnsvs.com/Meador/cnsvswa.php?sid=YjwpGFDzjw58fRy7aNG6 This was my first alarm to my own issues and has since helped me simply accept the condition. We tried Aricept which helped but overamplified dreams and caused side effects of daytime auditory dream moments & hallucinations in combination with the fatigue. It overheightened senses that can't handle it. ]

Mood Changes: Many people with multiple sclerosis experience periods of depression. Sometimes it is linked directly to physical changes in the brain. Understandably, it may also be an emotional reaction to having the illness and learning to cope with the symptoms and the challenges they represent. If you are experiencing feelings of depression or hopelessness, talk to your doctor. Treatment for depression is available. [BUT just because depression may be an aspect, doesn't mean you have to be on an antidepressant. If you can cope without, by all means, cope! The less drugs to interact and interfere in my opinion, the better off we are! I don't want a happy pill to help me forget how I feel, I want to learn to accept and cope with it. St Johns Wort is helpful for an even keel. Acceptance is the greater of it. Support by love ones makes a huge difference and understanding friends who recognize the intimacy of our loss is the best!]

Link: http://ms.about.com/od/multiplesclerosis101/u/symptoms_diagnosis.htm

Symptoms/Diagnosis of Multiple Sclerosis

By Julie Stachowiak, Ph.D., About.com Guide to Multiple Sclerosis

There are over 50 symptoms that are linked to multiple sclerosis (MS), which are vague and hard to quantify, mimic the symptoms of other diseases, and often come and go. This makes MS a challenging disease to diagnose. While diagnosis is becoming easier with the increased availability of MRIs, definitive diagnosis of MS is still a process that requires time and patience.

Multiple Sclerosis (MS) Basics

My Basic Symptoms (now) - the details are too varied with too many different degrees to list.

Back Pain
Balance Issues
Bladder Bowel issues
Brain Fog
Calf Muscle cramps- (spasticity)
Double vision
Extreme debilitating FATIGUE - like wearing a lead vest everyday!
Eye Floaters & Eye tics
Eyes differrent size pupils- precludes a migraine
Falls, Stumbling, Trips
Foot drop (causes the above)
GERD aka Acid Reflux
heat & cold exacerbation
Herky Jerky movements in limbs
Hoarseness - voice- frozen vocal chords
Intention tremors- internal tremors, shivers, teeth chattering,
L'Hermittes sign/pain in head
Migraines daily (topamax controlled now).
Numb Spots - everywhere
Optic Neuritis (rt eye)
PAIN- excruciating PAIN at various times
Restless Legs Syndrome
Severe Spasticity
Sexual Dysfunction.
tingling, buzzing sensation in body parts, like being zapped.
Tinitis
Tremors (rt hand, muscles twitching in right upper arm)
Vertigo
Wet feeling on feet while walking, feet feel wet in water.

Medications and Supplements

Amantadine 100MG AM & PM to stay awake along with the provigil (that the insurance has now denied).
Armour Thyroid 120mg - Hypothyroid '99
Atarax - 20mg - antihistamine-anti-itch
B Complex
Bactroban Creme - antibiotic for nasal ulcers
Biotin 5000mcg - hair & nails
Calms Forte (2) Sleep Aid
Coral Calcium - 1000mg - bones with Vit D therapy
Glucosomine Chondroitin w/MSM - knees Osteo Arthritis
Levaquin 750mg or 500mg - Urinary Tract Infections
Magnesium - 750mg daily - Muscles
Maxalt - Wafer sublingual - Migraines
Milk Thistle (liver function) reduces itching
Neurontin 300mg - Pain, spasticity & spasms (WIP)
Omega 3 Fish Oil Daily
Prenatal Vitamins (purer, less additives, higher in the ACEs)
Prescriptions:
Prilosec OTC (replaced Protonix - 40mg) - GERD
Provigil - 200mg - Extreme Fatigue (INSURANCE DENIED NOW!)
Skelaxin - 800mg - MS Hug Release
Topamax 100mg (am/pm 50mg) Migraine control
Tylenol #3 (codeine) - NSaid with Codeine for Nerve Pain
Valerian Root - Sleep helper
Vitamin D therapy 50,000IU tri-weekly

Wednesday, June 3, 2009

Sympathy from friends... thanks but...

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